I had my stem cell transplant in April of this year (2016). Things were going fairly well for a while – just a moderate amount of GVHD (mostly skin, upper GI tract, mouth) and a couple instances of viruses – CMV and BK. In August my WBC count started to decline and in October my RBC count and platelets followed suit. At my last visit my counts were WBC=1.0, RBC=2.93, and platelets were 4. I have been getting platelets every two or three days and when I go back, they are down in in the single digit range.

My doc has mentioned doing what he terms a “boost” – an infusion of stems cells from my original donor. He seems reluctant to do it because he says he will have to get me off of prednisone completely and the boost may trigger more serious GVHD than I have had in the past.

My last biopsy show “markedly reduced” cellularity – 10 to 15% but no cytogenetic abnormalities. The biopsy was done when my platelets first went to 4. A biopsy done at day 100 showed a cellularity of 25 to 30%

My question is has anyone had a procedure similar to the “boost”? Also has anyone had a problem where all your blood counts start to decline around 6 months from the your transplant?

At Day+210 my WBC was at 1.13, RBC at 2.91, platelets at 25 and neutrophils at 0.22. Blasts were at 33 percent. They started Vidaza immediately and my counts started going up quickly. It was the choice of Vidaza and not having a GVHD effect or a DLI with possible additional GVHD.

I wish you the best. It is a difficult decision. If doing the Vidaza they would need to boost your platelets to the 20-30 range and start with perhaps a half dose of the Vidaza. It is a tough call for the doctors.

Baille,
Thanks for the reply. When I talked to my doc about the "boost" he specifically said the cells would be stem cells - the same as what I got in the original transplant. I asked about DLI and he said a DLI is infusion of lymphocytes that have been extracted from the donor's blood and is used when you have reoccurrence of the disease and this was not what he was contemplating for me. My previous doctor had mentioned Vidaza but that was when I was Intermediate risk and wasn't planning on a SCT. Things went downhill fast with an increasing percent of Monosomy 7 abnormalities.

I'm really sorry to read that you're facing some issues at the 6 month point, Data. My thoughts and prayers are with you as you make decisions about what to do next.

While you're deciding, if you have no objection to natural immune boosters, you could try taking Olive Leaf Extract (get the best you can find) and Vitamin D3. Here in Australia I buy Comvita MediOlive 66 (http://olea.com.au/benefits/). Of course these will not cure, but may help you feel better and to cope with vulnerability to infections.

Hi Data. Does your marrow have any increased blasts? Are you 100 %donor or is the chimerism changed? Any increase in dysplastic cells? When I started relapsing they took me off drugs to prevent Gvhd thinking some Gvhd is good and may help fight off a relapse. We didn't have any stem cells in the freezer so a boost wasn't an option. Of course my experience didn't salvage the transplant. I'm not sure the is enough info to know if the transplant is failing. I have a transplant friend who's numbers also tanked. He ended up getting spleen removed which was complicated but resolved everything. He's now 2.5 years out and feeling great. Have they looked at spleen?

Cheryl.
Thanks for the reply and suggestions. The engineer in me has always made me shy away from stuff that isn't proven. I am sure it helps a great number of people but I like to stick with drugs that have gone through rigorous testing and have been proven to be beneficial. Thanks for the suggestions though.

Hi data,
I had my transplant in March. I also had minor gvhd. My dr did mention giving me more donor white cells... but only because I had traces of a mutation (runx1). The mutation was gone at last biopsy (yay!). So he hasn't mentioned more cells again.
However, my counts havnt been that stable. Last bloods platlets 84, neutrophils 1.0, hb 121. They think this is because I've been getting every virus my 19month old has been getting. Also issues with reacurring cmv.
Good luck with everything. My dr did say it is fairly common to receive more cells.
Lisa

If I were to take your biopsy lines out of context (meaning that I didn't know anything about you), they would read like someone who had Aplastic Anemia.

Given that you were fighting some big viruses post-transplant with a very immature immune system, I wonder if your immune system went haywire, similar to virus-induced aplastic anemia??? Are you still on cyclosporine?

Do you get any boost immediately after your platelet transfusions or is it pretty minimal?

Hopeful,
Funny you should mention Aplastic Anemia. When I read the definition of AA it does look my recent history. I was on cyclosporine but they took me off of that. The average increase in platelets has been 36.5 over 6 infusions where they have done a post infusion CBC. All totaled I have had 11 infusions since 10/11/16. I have been told the low platelets can make you tired and it seems to be true. I don't feel any different after the infusion though.

I experienced a decline in counts at around 6 months. I had very hypocellular in the marrow at 5-15%, and my counts were quite off. I also had some evidence of cytogenetic mutations in 1 out of 25 cells analyzed. My doctor spoke of doing some form of a boost, but thought that the declining numbers was due to GVHD or relapse potentially. I was put on vidaza and rituxan to try and combat both simultaneously, also to get rid of the steroids that I was on to try and tackle the gvhd.

After a single cycle of vidaza, my counts started improving, and by the time we finished with the rituxan, my gvhd had begun to quiet down. I had minor gvhd on most of my skin - really noticeable on the arms, legs, and face/neck. I had upper and lower gi symptoms, problems in my joints and eyes. All but the lower gut gvhd improved pretty well.

The part of your biopsy that concerns me is the dyspoesis, but that could be marrow stress from drugs or viruses, or hypocellularity.

End result of your question - yes, I had declining counts about 6 months in - the diagnosis was relapse or gvhd - both of which may have responded to vidaza and rituxan.

I have only really had gut gvhd with occasional flare ups in the other areas, but I am down to a low concentration of tac, regular photopheresis, and a small dose of budesonide every other day. Counts are really close to normal currently. All treatment with Vidaza and Rituxan ended in Feb 2015.

Good luck getting this challenge out of the way.

__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!

My husband experienced a decline in counts around 8 months post transplant which was attributed to a b12 deficiency. The deficiency was not picked up in his blood work because taking a folic acid supplement can mask it. This was picked up with a bone marrow biopsy. As soon as he started to receive b12 injections, his counts turned around.

I had a doctor's appointment today and my WBC, RBC, and platelets were all up slightly. I would like to see several consecutive increases so I am cautiously optimistic. Doc still isn't sure what the cause is.